Caregivng a “challenging” elder can be one of the hardest things you’ll ever do. I know, I went through a year of hell before I figured it out. I had been the light of my father’s life, but with the onset of dementia he turned on me, doing and saying things that I would have never believed he could do. Having no experience with eldercare ever. I just didn’t get it. I thought it was just more of his bad temper of a lifetime and his need to control, which it was, but it was also the beginning of dementia that made his actions more illogical and irrational than ever before. When he threw two little dilapidated hand towels at me, screaming and swearing at me for throwing them out, I was stunned and sobbed my heart out. With the knowledge I have now I’d say, “This seems illogical, this seems irrational!” BIG FLAG… it is! and I’d haul him off kicking and screaming to the Alzheimer’s Association’s best recommendation for a geriatric specialist to be evaluated right away. I’d know not to waste time with his regular doctor who didn’t specialize in dementia.
The stereotype of a person with dementia (Alzheimer’s is just one of many types) is that of someone who doesn’t know what they are doing at all. That’s way down the road, Stage Three, but first you have to go through Stage One (2-4 years), and then Stage Two (two to ten years), before you get there. The beginning stage of dementia is so intermittent, it comes and goes, and statistically families wait four years before they reach out for help, generally after a crisis, because their loved one acts normal so much of the time. By that time, however, the person has gone through Stage One and is starting Stage Two already, which usually requires full-time care. My mission is to wake everyone up and get them to acknowledge the early warning signs, reach out for help immediately, because with medication (Aricept, Exelon or Reminyl) the dementia might be slowed down 2-4 years doctors say. By keeping your loved one in Stage One a few years longer, it is going to save your family a lot of heartache, Kleenex and money. It will also save our society the burden of caring for so many elders who have progressed into Stage Two too soon.
When your loved one asks you the same question over and over, gives you incorrect directions in the town they’ve lived in for many years, looks at their beloved granddaughter and asks their name, or forgets that they just told you that story, it’s time to act. Once you properly manage the brain chemistry for the dementia, possible depression and maybe even aggression, you will be able to start behavior modification techniques. Amazing as it sounds, the use of tough love with rewards and consequences worked to turn around the most obstinate man on the planet: my father. By being 100% consistent, never rewarding bad behavior, using praise to encourage good behavior, he learned that he could (as Mom would say), “Catch more flies with honey than vinegar.”
I learned how to: hire caregivers, elder-proof the house, handle finances, and locate so many valuable resources for seniors. Then, Adult Day Care turned out to the answer to getting my parents out of bed 23 hours a day “waiting to die.” Getting my father to go was no small feat. He threw his food on the floor in a raging temper tantrum, tried to escape, and even messed in his own pants to keep from going back. The administrator said, “His dementia is very far progressed, he just doesn’t know what he’s doing.” We howled… we knew that he knew exactly what he was doing. We told him, “Mom loves the Day Care, so she’s going. You can stay home all by yourself while she goes and has fun.” The next day he got up and went to Day Care without a peep, ate his lunch, made a birdhouse, sang Swanee River and danced a waltz. The administrator was shocked, “We can’t even believe he’s even the same person!” Let me assure of this: Demented does NOT mean stupid.
A year later, after turning around a seeming impossible situation, I knew it was all worth the horror and the heartache to hear my father tell me he loved me again. I felt so compelled by what I lived through, I wrote a book so that you won’t have to struggle as I did to figure out how to manage your elderly loved ones.
Jacqueline Marcell
